CF MiniCon

I am really excited about the next #CFminicon on Aug 15th and I am so honored to be co chairing it with my friend Laima from LungStoryShort 

Getting a lung transplant can require a lot of preparation and planning. Whether you’re preparing, or have already had one, or just want to learn more about lung transplants this is the minicon for you.

For me living life in ‘limbo land’ and no longer being able to do the things I used to do has been quite an adjustment. As I adjust to my ‘new normals’ with my CF lungs I know a double lung transplant is in my future and I want to learn as much as I possibly can. Although transplant can be pretty daunting, I look forward to the day when my 'new normals' will be adding all the things back into my life that I miss with another pair of lungs that will be perfect for me when the time is right.

I love hearing stories of others and meeting people who are living life how it was intended to be lived with their new perfect lungs. Their stories give me hope and strength for when the time is right for me to embark on the transplant journey. Registration is live so go sign up now. 

https://cff.swoogo.com/minicontx

See you soon!! Breathe out Love! Xo❤️

Cystic Fibrosis Awareness Month

Sometimes we often hear "But you don't look sick"... If only people had X-ray vision. 

May is Cystic Fibrosis awareness month and it just happens to be my Birthday month...coincidence?! I think not!! 😉 So please join me and let's make everyone aware...CF needs a cure!! This is my actual X-ray, I call these my pearly whites. The white is irreversible scarring from the mucus and the many lung infections which result in loss of lung function, my lung function is currently at 27%. 

CF is a genetic disease that primarily affects the lungs and the digestive system. It causes our bodies to produce a thick sticky mucus. The mucus builds up in the lungs and can lead to life threatening lung infections. A CFers day consists of hours of breathing treatments, airway clearance, exercise, and handfuls of pills to try and stay healthy. 

We will continue to do our part, until that one day CF stands for CURE FOUND!! Breathe out love! Xo ❤